I’m a big fan of public radio. I have been for as long as I have had control of a radio dial. I was the nerdy teenager who fell asleep to Phillip Adams and not Duran Duran.
Now I’m middle aged and I sit in the millieu comfortably in so many ways. Except for one.
I have a child with chronic medical conditions and lifelong diasabilities. The letters after his name include ASD (autism spectrum disorder), TM (transverse myelitis), JFLE (Juvenile Frontal Lobe Epilepsy), CTD (connective tissue disorder) and GI (gastro-intestinal) issues. He has hyperacusis, cochlear dehisence and immune-defficiency. He also has a wicked sense of humour, astonishingly beautiful eyes and a heart of gold.
When I listen to the radio some days, I find myself muttering like Dick Dastardly. As I supervise my son’s education, cook his customised food and clear up his discarded trains, I yell at my beloved radio without realising. I’m reacting to the fact that so much of what we are presented through the media is delivered with little acknowledgement that there is difference in the world – different abilities, different lifestyles, different journeys through life. There’s the odd mention of LGBT issues, occasional disability stories but, for the most part, the underlying broadcast assumption is that you (the consumer) are on the road more traveled.
Mostly, after my outbursts, I say to myself ‘Get over yourself. They have to cater for the majority. They can’t cover everything and everyone.’ But today, the radio was talking about something that was meaningful to us. They were talking about personalised medicine – genetic testing and its consequences.
So I called in, I spoke to Richard Glover‘s producer and I waited my turn. Alas, time ran out, but if I had been able to speak, here’s what I would have said.
“My son is a cracker of a kid. He works harder than anyone I know to take the developmental steps that all his same aged peers take for granted. He sees himself as the epitome of 10 year old boy-ness, which is exactly how he should feel.
Every night, however, he falls asleep not knowing if his deepest sleep will be interrupted by violent seizures. He doesn’t know if he will wake in an ambulance or in his own bed. He is tormented by a dog barking two blocks over, his body wracked by the simplest sounds. He shakes violently when he tries to write, both because of a profound motor skill deficit and the medication he must take to attempt to gain control over the epilepsy. He can’t eat the majority of things a child wants to eat, simply because his bodily functions shut down if he does. He adores his friends and yet struggles to keep them, if they are neurotypical, because most kids live in a world where thinking fast is valued over thinking fairly.
Each of his diagnoses came evenly spaced over his life and each as a surprise. The doctors use the phrase ‘struck by lightening’, each time. As though he, they and we are powerless to predict anything about his health.
Don’t get me wrong, his doctors are brilliant people – neurologists, gastroenterologists, immunologists and one of the best paediatricians on planet Earth. And yet, they are at a loss to circumvent another strike.
Now, have begun genetic testing. It’s NOT the be all and end all. It’s not a magic bullet. It’s not even a totally workable solution – yet. But it is the first time in this life that we have a sense that we are in control of the weather.
We know practical things like why our son can’t tolerate certain medications and why his Vitamin D levels are so dangerously low no matter what we do. We can fix those easily now. This helps his everyday health, as well as protecting his future wellbeing.
We are discovering theoretical things like which parts of his brain are genetically likely to be strong and which are not. This stops us from chasing rainbows and sends us on more practical paths of intervention.
And most of all, we are discovering that we have responsibility for his health – both in a personal sense and in a big picture sense. It’s not written in stone, by any stretch of the imagination, but it is a code that can help us better understand where we have come from and where we can go safely.
The results may well be confronting at times. But they are no where near as confronting as discovering him frothing in his bed at 1am. The predictions may be a little terrifying, but no where near as terrifying as not knowing why your perfect baby has grown to gather medical diagnoses like other children gather Lego kits.
We know the world he lives in in increasingly toxic. We know we have made well meaning decisions that were not the best for him. We need to know how to protect him so he has even a fighting chance of survival when we are not around. We need to know how to prevent more children having the same range of supposedly un-aviodable challenges he does.
I know if you are not us, it is tough to understand why we are so desperate for reliable answers and guidance. Kids should be kids, and not be burdened by the negative potentials in their future, right?
That is abundantly and beautifully true, if your kid isn’t already burdened by the mysterious ‘lightening strikes’ of disability and chronic disease. Even more true if solutions to their problems can be found in their own intestinal fortitude and not, as my son’s are, by searching endlessly for a ‘needle in a haystack’.
When you are looking proudly at the back of the head of your grown up offspring as they head off on their gap year or through the front door of their very first share house, it’s probably irrelevant that people like us will never have that opportunity.
I say this not to gain pity. We so don’t need that.
I say it to open peoples’ eyes to the fact that we are not all the same. We don’t all treat difference as something to fear. We don’t all experience normality as the norm.
We did not all get the choice to avoid the road less traveled.
Genetic testing and the emergence of personalised medicine doesn’t just help my kid. It helps us all. Small picture, we hopefully start to understand what the future holds for our boy. Big picture, we all start to understand what we can do for ourselves, our kids, our grandchildrens’ grandchildren. If we are lucky enough to have them.
So, if you eschew the genetic testing, fair enough. That is absolutely your choice.
But as you sip that glass of red while wondering if you are becoming drunk Uncle Bob, or stare at a diabolical sudoku and fear you have met your demented destiny… spare a thought for those of us who truly need the testing and for the world to have an open mind about it.
Spare a thought for my son, who tonight will be dodging lightening in his dreams.
And thanks for taking my call and listening. It means a lot.”
They totally would have let me talk that long on talk back radio too. 😉